Saturday, June 29, 2013

Drop the language of disorder: less medicalising and more understanding, please

Notes for a speech given at: Division of Educational & Child Psychology
One-day Event - The Medicalisation of Childhood: Time for a Paradigm Shift; Old
Trafford, Manchester, June 28th 2013. These are my NOTES for the speech,
the speech as delivered may have been different.

I have the utmost respect for medical colleagues, but the medicalization
of childhood has gone too far. The recent revision of the American Psychiatric
Association's Diagnostic and Statistical Manual (DSM-5) is a prime example of
the creeping medicalisation of normal life. If our colleagues actually inform
their care decisions on the basis of DSM-5 diagnoses, we would see millions of
people with a range of perfectly understandable and normal problems diagnosed
with mental illnesses. The consequences could be catastrophic - especially for
vulnerable populations such as children and older people. Instead of
understanding distress and offering help, people will be diagnosed and medicated,
and the origins and causes of social problems will be minimised and ignored as
doctors look for biological explanations and medical solutions.

We need to step back from the ‘diagnosis & treat’ mentality and
understand people a little more.

There have ALWAYS been problems with psychiatric diagnosis. A rather
remarkable editorial in the Times of Saturday July 22nd, 1854
stated:

“Nothing
can be more slightly defined than the line of demarcation between sanity and
insanity. Physicians and lawyers have vexed themselves with attempts at
definitions in a case where definition is impossible. There has never yet been
given to the world anything in the shape of a formula upon this subject which
may not be torn to shreds in five minutes by any ordinary logician. Make the
definition too narrow, it becomes meaningless; make it too wide, the whole
human race are involved in the drag-net. In strictness, we are all mad as often
as we give way to passion, to prejudice, to vice to vanity; but if all the
passionate, prejudiced, vicious, and vain people in this world are to be locked
up as lunatics, who is to keep the keys to the asylum?”

Diagnostic
systems in psychiatry have always been criticised for their poor reliability,
validity, utility, epistemology and humanity.

Reliability

Reliability,
in this context, refers to the degree to which two clinicains or raters will
agree that the criteria for a particular diagnosis are met. With great effort,
and standardised approaches, it is possible for reliable diagnoses to be
generated. But such practices are rarely adopted in clinical settings, and psychiatric
diagnoses are worryingly unreliable, as the ‘field trials’ for DSM-5 have
indicated.

At the
same time, people change. Children change in particular. And children’s behavior
is highly dependent on context – how a child behaves in setting A isn‘t
necessarily how they behave in setting B.

Validity

And it’s
worth pointing out that agreement between two raters, and agreement with
specific criteria, does not confer validity. I am white, brown-eyed,
English-speaking. I’m an unabashed atheist and socialist. If we were able,
reliably and objectively, to assess whether I meet criteria for “tending to say
things without thinking”, “easily distracted” and “likes shellfish, but dislikes
salmon”, you could identify ‘Kinderman’s Syndrome’. Perhaps reliably. But that
has no validity.

The poor
validity of psychiatric diagnoses—their inability to map onto any entity
discernable in the real world—is demonstrated by their failure to predict
course or indicate which treatment options are beneficial, and by the fact that
they do not map neatly onto biological findings, which are often nonspecific
and cross diagnostic boundaries.

We do –
and I need to stress this – know that human behavior is intimately associated
with brain functioning. A wide range of phenomena – low mood, poor self-esteem,
loss of social hierarchy…. hallucinations…. Fear of imminent persecution or
threat … hopelessness… All these phenomena have biological as well as
psychological and sociological aspects.

But,
unfortunately for the authors of DSM-5, these psychological and biological
processes don’t appear to map onto diagnostic categories. They do, as Joanna
Moncrieff has suggested, make much more sense mapping onto the action of drugs.
They also seem to have more coherence with genetic factors.

Ethics

These
things have ethical aspects.

In
epistemological terms, diagnoses convey the idea that people’s difficulties can
be understood in the same way as bodily diseases. This means we look away from
social – or educational – causes, and look inwards, to the functioning of the
brain.

Worse
still, diagnoses are used as pseudo-explanations for troubling behaviours - he
did this because he has ADHD. There’s rarely the follow-up question of ‘why
does he supposedly “have” this? – the explanation presumably being in his
brain. And nobody questions the circularity of ‘we know he has ADHD because he
can’t concentrate, and he can’t concentrate because he has ADHD.

This is
seriously bad news… millions of kids – kids with problems, kids whom the
education system is failing, kids with inadequate parents or incompetent
teachers, are being labeled as mentally ill and drugged.

Notwithstanding…
that, one blogger on an Oxford University Press site (Joel Paris, MD) tried to defuse this row by saying that “Clinicians
need to communicate to each other, and even a wrong diagnosis allows them to do
so”. So, let’s get this right… clinicians can’t agree, the diagnoses don’t reflect
real-world entities, there are no reliable biomarkers, they don’t predict
outcome or treatment and don’t indicate aetiology… But we need to communicate,
and so we use these diagnoses… even if they’re wrong… a position presumably
reflected in the suggestion by Dr Ronald Pies, professor of psychiatry at Tufts
University, who suggested that invalidity was OK, because these are “heterogeneous
diagnoses”… I’m not sure if being wrong is synonymous with ‘invalid’, but it’s
close. And I’m not sure if ‘heterogeneous’ is quite the same as ‘invalid’, but
it’s close.

DSM-5

If
implemented, the DSM-V would lead to a lowering of a swathe of diagnostic
thresholds. This would inflate the assumed prevalence of mental health problems
in the general population. This might be good news for pharmaceutical
companies, but is a potential threat to the general public and especially
vulnerable populations such as children and older people.

It is
important for all of us to ensure that our children learn appropriately to
regulate their emotions and grow up with a sense of moral and social
responsibility. But is it appropriate to invoke the concept of ‘disorder’ when
children need extra help?

While
DSM-5 itself should be ignored, we also need a wholesale revision of the way we
think about psychological distress. We should acknowledge that such distress is
a normal, not abnormal, part of human life—that humans respond to difficult
circumstances by becoming distressed. It should recognise that there is no easy
‘cut-off’ between ‘normal’ experience and ‘disorder’, and that that
psychosocial factors such as poverty, unemployment and trauma are the most
strongly evidenced causal factors for psychological distress.

A valid and humane system for identifying, describing and responding to
distress should reflect these principles.

An alternative

We need a
wholesale revision of the way we think about psychological distress. We should
start by acknowledging that such distress is a normal, not abnormal, part of human
life—that humans respond to difficult circumstances by becoming distressed. Any
system for identifying, describing and responding to distress should use
language and processes that reflect this position. We should then recognise the
overwhelming evidence that psychiatric symptoms lie on continua with less
unusual and distressing mental states. There is no easy ‘cut-off’ between
‘normal’ experience and ‘disorder’. We should also recognise that psychosocial
factors such as poverty, unemployment and trauma are the most strongly
evidenced causal factors for psychological distress in adults although, of
course, we must also acknowledge that other factors—for example, genetic and
developmental—may influence the magnitude of the individual’s reaction to these
kinds of circumstances. And we should understand that children,
quintessentially, respond to their environments… to understand a child’s
behavior, look around him.

There are
alternative systems for identifying and describing psychological distress that
may be helpful for the purposes of clinical practice, communication,
record-keeping, planning and research, such as the operational definition of
specific experiences or phenomena. Some international effort will be needed to
develop a shared lexicon, but it is relatively straightforward to generate a
simple list of problems that can be reliably and validly defined; and the
problems leading to a diagnosis of ADHD are perfect for this.

There is
no reason to assume that these phenomena reflect underlying illnesses.

While
some people find a name or a diagnostic label helpful, our contention is that
this helpfulness results from a knowledge that their problems are recognised
(in both senses of the word), understood, validated, explained (and explicable)
and have some relief.

Surely a
description of a person’s real problems would suffice? A description of an
individual’s actual problems would provide more information and be of greater
communicative value than a diagnostic label.

For
clinicians, working in multidisciplinary teams, the most useful approach would
be to develop individual formulations; consisting of a summary of an
individual’s problems and circumstances, hypothesis about their origins and
possible therapeutic solutions. This ‘problem definition, formulation’ approach
rather than a ‘diagnosis, treatment’ approach would yield all the benefits of
the current approach without its many inadequacies and dangers.

1 comment:

I agree totally. As an educational psychologist I encountered several children diagnosed with ADHD and drugged with Ritalin: one developed anorexia, a well-known side-effect. Parents and teachers very happy, as the children became docile, even passive, and the parents got financial support for their child's 'disability' . A quick and easy cure? No, damaging for the child. Lively challenging children deserve better, but it takes time and effort. Drop the labels!